ADVOCACY

Guide for parents after diagnosis

Your newborn child is finally here, but when you discover that all is not as it should be, what do you do? – When your child is diagnosed with a rare condition, there are so many things that go through your head.

OIFE recommends the publication “Guide for parents after diagnosis”  to parents after they have received aFront page of guide for parents diagnosis about their child’s illness. This brochure is disease independent and specifically describes the psychological aspects of having a child with a medical condition. It has been developed by a worldwide non-profit patient organization based in the Netherlands called CMTC-OVM.

Your child’s condition affects not only your child but the whole family. But thankfully, there is plenty that you can do to help you and your child: There are a whole arsenal of therapies and organisations available to you out there. You don’t have to be alone!

The brochure is available in five languages and can be downloaded here:

English

Spanish

French

German

Dutch

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